Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective

Friday, March 2, 2012

Another Face of CDH - Gibson, an Amazing Warrior

Gibson in the NICU

Gibson's x-ray after surgery

Very proud Dad and Mom!

I have business to do!

Don't you wish you could wear this look this well?

In his parents words:

Our son, Gibson Jones, was diagnosed with a left-sided Congenital Diaphragmatic Hernia (CDH) at our twenty week ultrasound. We were told his chances of surviving this journey were extremely low. He was given a ten percent chance of living. Before this day we had never heard of a CDH. It has changed our lives forever.

We searched across the United States to find a medical facility that could handle such a serious condition and after being referred to a team of physicians and nurses in Salt Lake City, we discovered that the best team in the world was located just 200 miles south of us. Because we had found a highly qualified team of doctors and equipment, we relocated to Salt Lake during the last month of the pregnancy. Gibson was born March 31, 2011, in Salt Lake City at University of Utah Hospital and was then transported to Primary Children's Medical Center where he spent the next few months. As destiny would have it, this was National Diaphragmatic Hernia Day.

Gibson had a rough start at life and required extracorporeal membrane oxygenation (ECMO), which is the strongest form of life support, when he was only six hours old. He was on ECMO for four days and it would have been longer, but he developed a brain hemorrhage and had also suffered a cerebellar stroke. He was taken off of ECMO and later that evening had a pulmonary hemorrhage. He was dying. The nurses and doctors had done everything they possibly could, but nothing was working and we all feared we would lose Gibson that night. Thankfully, a brilliant and talented surgeon was on-call that night and gave Gibson a special gift. He agreed to do Gibson's diaphragm repair surgery even though he was likely not going to survive the surgery; but he was definitely not going to live without it. To everyone's surprise, Gibson survived the surgery. Gibson survived the next twenty-four hours. Gibson survived his brain bleeds. He also survived pneumonia, a bowel obstruction surgery, and three months in the Neonatal Intensive Care Unit (NICU). He made an amazing recovery. We had a miracle baby!

When Gibson proved he was ready to come home, he required oxygen, had paralyzed vocal cords, and a feeding tube because he had an oral aversion. He was on eight different medications and was still very weak. Seven months later, Gibson has a permanent feeding tube in his belly and is learning how to eat normally. Due to the CDH, Gibson’s left lung was unable to develop normally. He is still on oxygen because of the undersized left lung, but he is getting stronger and is requiring less assistance. His left lung has grown some and his right lung has grown to compensate for the lack of the left. Our goal is for him to be off of oxygen completely in the coming months. Developmentally, Gibson has caught up with children his age and is as busy as any other little boy. He is so happy and so full of life. He has made us the proudest parents in the world and he is our little miracle.

We are so thankful for modern medicine and the many, many doctors and nurses who took amazing care of Gibson while in the NICU at Primary Children’s Medical Center. They went above and beyond for our family and completely fell in love with Gibson.

1 comment:

Thank you so much for posting Gibson's story! It means so much to us to be to share it with the CDH world. We hope we can help other families in the same situation someday. We're so thankful for Breath of Hope and all of your hard work. It's a blessing to have a foundation like this for all of us. It's truly a special bond between us all. THANK YOU!!!